With EoE, Allergies, Asthma and a G-Tube

Failed scopes, again

I ran our bags out to the car and came back in the house to get Gage and Tinleigh. We’ve done scopes for 5-1/2 years now. My kids are pro’s, unfortunately. I knew I could handle 2 of them on my own. As I walked in through the door I could see huge tears building in Gage’s eyes. He asked me if Charlie could come along. I told him siblings aren’t allowed, unless they’re having a procedure done. Gage must have hugged Charlie 10 times and sobbed every time. It was so sad. He just didn’t want to leave his best friend. We got in the car and went down the road for gas. Gage sobbed the whole way there, uncontrollably. I think he just had some built up emotions he needed to get out. I told him to think of it like the school day. He told me they see each other at school. So I broke out the suckers I had reserved for later down the road. It helped dry up those tears.

About an hour into our drive something must have clicked in Tinleigh’s mind because she started in. She didn’t want to go get scoped. She didn’t want to see the doctor. She didn’t want to try new foods. She wanted me to stop the car, turn around and go home. She didn’t let up. She cried, Gage cried. It was the least fun car ride. Tinleigh continued on for the next 2 hours.

When we arrived at the hotel we checked in. They showered and we crashed for the night. Did you know that sleeping with two kids in a king size bed they can still manage to turn themselves sideways and kick you? I of course started a headache during the car-ride from stress and instead of going away while I slept it grew. Up super early, because we were first appointment of the day, I knew I was brewing a migraine. I had no medicine with me, neither did the desk clerk. Tinleigh was already crying again. Upon arrival they wanted the kids to put on their gown before getting weighed. There went Tinleigh again. I somehow convinced her to put it on. We got all checked in, met with the doctor, anesthesiologist and the O.R. nurse. We have a family history of malignant hypothermia so being first before the machines are used is important. My kids are also anaphylactic to egg and soy, which most drugs used to knock them out with are based with, so getting their meds to be put under figured out is always exciting for the anesthesiologist. They’re some of the most little complicated people.

The nurse came and gave Tinleigh some medicine to make her loopy. Tinleigh sat on my lap and finally started to relax. Gage laid on his bed and chilled. Thankfully he was calm. Once Tinleigh was, what we thought, completely relaxed the nurse came to get her. Let’s just say Tinleigh verses oral versed, Tinleigh prevails. She immediately began to freak out. She was not going to sit on her bed and go for a ride. So the nurse and I agreed I would carry her to the doors. Down the hall we went. Tinleigh got loud. She was in complete freak out mode. If you’ve never met Tinleigh and never read my blog before let me just share that Tinleigh is a beast when she gets worked up. So at the doors I handed her off to the nurse and told her I had to go to the potty but would be right back. Yeah, that line didn’t work this time. She screamed as the doors closed behind them. Have I mentioned anything about my migraine? Yeah it was in full effect now. I went back with Gage and fell into my chair. I felt horrible. Not just my head, but for Tinleigh too. She had never been that upset before. I knew that she needed a break from scopes for a while.

The anesthesiologist came back after a short time to prep Gage. She looked at me and said that was horrible. She said Tinleigh was so out of control. She then began to drill me on not getting the kids scoped and why can’t we just let them eat….. My head hurt so bad I wanted to puke on her crocs. I was in no mood to be “yelled” at by someone that didn’t understand the disease. So I told her we were going to give Tinleigh a break for a while. About 15 minutes later Gage was ready to go. He had already gotten his loopy meds and was ready to go. Back he went with no issue. I then went in search of some Excedrin. I luckily found an $8 box of them in the gift shop. I gagged a couple down, drank a advocare meal replacement shake and headed back into the waiting room to get myself together. I had about 20 minutes of down time and it was just enough time that my headache started to let up.

The doctor came out to discuss how things looked. I had never met him before, you don’t always get your GI doctor unless you request them. He was super nice but his English wasn’t so good. All I could think of was the Swedish Chef on the muppets. I needed that comic relief. He told me they didn’t look horrible but there were signs of the disease. That wasn’t what I wanted to hear. He said the nurse would have the pictures when I was reunited with the kids.

A refresher – Gage’s last scope was 50 eosinophils in the mid esophagus and 80 in the lower. We removed sweet potatoes and broccoli, which he had been trialing for 8 weeks with no signs of a reaction. The GI doctor also added omeprezole in hopes some of those eosinophils were from reflux. This scope should have been perfect for him. He had 17 in the mid and 50 in the lower. Tinleigh’s last scope was 1-5 in the mid and 20 in the lower. We let her keep sweet potatoes and oranges thinking that her eosinophils really were from reflux. So we started her on a cousin to omeprazole, because Tinleigh’s allergic to omeprazole. Her face swells when she takes it. So Tinleigh’s scope should have been clear as well.

Tinleigh

Gage

What we’re looking at in these pictures is their esophagus. Your esophagus should look like the back of your hand. Smooth and pink. Gage is probably swallowing as they snapped his picture, he wasn’t that inflamed. But, he was inflamed and those lines running down shouldn’t be there. The same with Tinleigh’s, those lines shouldn’t be there and she’s inflamed also. Gage’s biopsy results show now that he had 15 eosinophils in his mid and 30 in his lower. Which is great improvement. However, having removed the trigger he was trialing and adding a PPI he should definitely be at zero throughout. So we knew that something he had scoped as a pass before has now become a trigger. The thing he eats most of is rice. So out goes rice. Which is huge because he could have rice noodles, rice milk, rice chex, rice crackers, rice krispies and his special birthday cake mix was made from rice. HUGE thing to let go of, and knowing he probably will never get it back is even harder. Explain that to your 7 year old. Rice was the very first thing he passed after getting his feeding tube almost 3 years ago. Tinleigh’s scope results stayed exactly the same. So that means she does not have reflux at all. It means that sweet potatoes and oranges are in fact a fail. The GI doctor thinks it’s probably the sweet potatoes and not the oranges, but since we tried them together we have to remove both. So, Tinleigh is back down to only having black olives, blueberries and cocoa. Life sucks for Gage and Tinleigh right now. However, after removing those foods and giving their esophagus time to heal we are going to move forward and continue to trial things. Gage is going to get to try dairy. Dairy was the last thing we removed from Gage’s diet before he got his button. He was 4-1/2 the last time he had it. He is so excited. Dairy is a huge trigger in the EOE world. My kids are extreme cases though and GI said, just maybe, dairy will be okay for Gage. She said if he wants to try it so bad lets just do it. For Tinleigh, she really wanted me to have her trial avocado, but I reminded her how hard it is to find good ones at the store. She agreed, so we’re going to let Tinleigh try black, red and white beans instead. Tinleigh use to love black beans so I’m hoping she still does. She’s more of a salty than sweets girl. October 21st is the day they both will get to trial these things. We have no future scope scheduled for either. We do plan to just have an office visit in a few months to see how things are going.

Back to the hospital. Tinleigh came out first and was not happy we did that to her. Not happy at all. She refused to let me hold her and sulked in her bed. She wasn’t out of control screaming and ripping her IV out like she did as a baby, thank goodness. This time she was sharing ugly words with me instead. The nurse and I did everything we could to cheer her up. It was pointless. Scary thing Tinleigh told me in her groggy state was that she had a dream the doctor put something down her mouth and she felt it, pointing to her chest, and it pinched her inside. Um… is that possible? Was she not completely knocked out during the procedure? Does she really remember procedure? I told the nurse, she didn’t know what to say. I will be bringing it up at our next appointment. No wonder Tinleigh doesn’t like to be scoped. Tinleigh also asked me if I heard her screaming. She told me she was screaming NO at the top of her lungs. I guess the anesthesiologist was right.

By the time Gage came out Tinleigh was much more awake and happier. We rolled a TV over to their beds and they chilled for a while watching a movie.

Gage snapped this picture.

We have to stay an hour after the procedure to watch for malignant hypothermia signs, making sure their bodies don’t react to the anesthesia.Tinleigh showing what the “drink” looks like in her arm. No needles at this hospital, only tiny tubes is what we tell them.

The day was exhausting as it always is. Up early, emotionally draining and still a 3 hour drive back home. I can say I successfully did it all by myself. It didn’t turn out as I had hoped though with their emotions being so high.

Charlie update: Charlie has been trialing beef since the summer. We don’t scope him as often because he is at the end of his food list on what he can trial. His reality is he’s truly allergic to everything remaining on his list, which is 17 foods. He doesn’t eat beef but maybe 2-3 times a week. He’s been having some chest and belly pain along with tummy troubles. It’s a few days a week. He’s missed a couple days of school because of it. That throws up a definite red flag. Is it the beef though? So after discussing with with our GI doctor we decided to start him on a probiotic for a few weeks and see if that helps. He’s already on a max dose of omeprazole because he does have reflux. If his symptoms do not improve then we’ll probably scope him. If he does get better then we’ll wait until the first of the new year and scope him them.

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Been thinking about your gang and wondering how scopes went. (I have EoE). Can’t even fathom that drive/overnight/scope 2 kids combo. I hope your health care provider gives you an opportunity to rate your experience with that anesthesiologist. That was uncalled for and Insensitive!

So sorry to hear that the scopes didn’t go as well as hoped. But you’re one supermom getting through this. I hope you had some time to relax afterwards! Hopefully, it’s not beef that’s causing Charlie’s troubles. And I’m hoping Gage and Tinleigh will heal soon and get to eat some new, tasty and non-EoE-triggering foods soon. They’re real troopers!
It’s great that your cute little Layton is doing so well!
All the best from Germany,

I have a question for you! My son has EoE and whenever he gets a cold, it is severe. I was wondering if that has been your experience as well. My two girls who do not have EoE (knock on wood) do just fine with an illness (can function normally). But my son sleeps constantly for days, it takes him a really long time to recover, he stops eating, and pumping formula into his G-tube becomes an emergency (he normally eats most of his calories by mouth). He is hospitalized with the average cold more often than not. Do you know if this goes along with having EoE?

Our family

I’m the average stay at home super mom. Run the daily grind of raising two boys and two girls.

I love coffee, dancing, painting and teaching my children how to grow into the best people they can be.

All three of my oldest kids and my husband have Eosinophilic Esophagitis, multiple food and environmental allergies and the kids all have asthma. Our youngest does not have EoE but does have some strong environmental allergies and chronic urticaria. More recently the boys were also diagnosed with Elhers Danlos type 3.

Dealing with these issues daily is hard but we still LIVE life to the fullest. Nothing holds us back. We play sports, visit animal farms, go out to eat on occasion and travel. We LIVE!

I have started this blog in hopes of helping other families dealing with these issues to see the brighter side of life. Let them see they are not the only ones. By sharing how we LIVE and handle certain situations we hope others will be inspired to try to do the same.